I was told I had colon cancer at 28 and would need a colostomy bag – but breakthrough beat the tumour WITHOUT an operation
18%: The increase in your risk of bowel cancer if you eat less than 10g fibre a day
To be told you have cancer at the age of 28 is surely one of the most frightening and earth-shattering pieces of news you can receive. But for John Parnell there was more.
He would need major surgery to remove the tumour in his bowel — and would be left with a permanent colostomy bag.
In remission: Cancer survivor John Parnell with his wife Anna
‘I’d noticed some blood and mucus in my stools. I put off going to see the GP for about four months,’ says John, who was a helicopter pilot in the Armed Forces at the time and lives in Hampshire.
‘I didn’t think much of it, but the GP referred me to a consultant for a colonoscopy. Then they found a tumour and told me I had cancer.
‘It was harrowing, a massive shock. I looked on the internet and saw the fatality rate – there are 16,000 deaths every year. I knew I had a very serious condition.’
John’s doctors told him he would start chemotherapy and radiotherapy immediately to shrink the cancer before surgery. The tumour was 5cm across, and, because of its position, the procedure would result in him wearing a stoma bag for the rest of his life.
But after seeking a second opinion, John learned of a new approach to bowel cancer being trialled at a London hospital. He was successfully treated without a single operation and now has a normal functioning bowel.
In 2011, John celebrated being free of cancer for five years — meaning he is in total remission — and his wife Anna recently gave birth to their first child, Henrietta. ‘I feel I’m going to live a long life,’ says John. ‘I feel extremely fortunate.’
Around 40,000 people are diagnosed with bowel cancer every year in the UK, making it the third most common type of cancer. It’s also the country’s second biggest killer.
As with most cancers, it can be successfully treated if caught early, usually with a combination of radiotherapy, chemotherapy and surgery.
However, one in ten patients will require a colostomy bag because their cancer is situated lower down the colon.
But, in 2006, researchers at the Royal Marsden hospital in London started investigating whether this was always necessary.
Oncologist Dr Diana Tait explains: ‘Historically we gave patients chemotherapy and radiotherapy first to shrink the tumour, which gives a better chance of the operation being a success.
‘But in about 15 per cent of patients we found that, after operating, when we removed the sample and sent it off for testing, there would be no cancer left at all — just scar tissue.’
The chemotherapy and radiation treatment seemed to have been enough to completely eradicate the tumour.
‘This might not matter so much to those not needing a stoma bag,’ says Dr Tait. ‘But it’s different for patients left with a life-changing side-effect that is devastating for body image to be told there hadn’t been any cancer to take out.’
The team began recruiting patients to take part in a ‘watch- and-wait trial’ — having chemotherapy and radiotherapy as normal, but then skipping surgery and instead beginning a programme of rigorous monitoring with regular scans and tests.
The trial is limited to people whose cancer is low down in the bowel and who show a good response to chemotherapy and radiation.
There are currently 39 patients taking part in the trial — the team hope to recruit 59 and publish their results in 2015.
‘We scan the patient every four weeks for four months, then every three months for another year, and then every six months,’ explains Dr Tait.
‘If there is no response, or there’s any sign of regrowth of the tumour — or if the patient simply decides it’s what they want, they go to surgery.
‘Of course, it’s a bit of a leap of faith, but a lot of people say they just couldn’t live with a stoma bag — particularly young people who may be leading very physical working lives and starting new relationships.’
John, who now works for a helicopter manufacturer, says it was a tough decision not to have surgery.
‘I did a lot of homework. I had a whole file of research and discussed it all with my parents, and the doctors at the Marsden.
‘I knew I wanted to avoid surgery if I could. It wasn’t really a vanity thing, but I knew that a colostomy bag can limit aspects of your life — you can’t do any heavy work, for example. I was single at the time, too, and wanted to get married one day.
‘And, of course, any surgery comes with complications. In the end, I weighed up the risks and it felt like the right thing for me.
‘I also knew that if the cancer came back at any point I could still have surgery.’
John had 15 minutes of radiotherapy every day, five days a week, for six weeks, and a relatively low dose of chemotherapy drugs for the same amount of time. He didn’t suffer any side-effects — but waiting to see if the treatment had worked tested his resolve.
‘It consumes you a bit and in the weeks before each scan I’d get more and more anxious,’ he says.
‘At the beginning, when I was still experiencing symptoms, I thought: “It’s coming back. It hasn’t worked.”
‘In the end, I guess I was pretty stubborn about it and convinced myself I would beat it. Each scan was a personal milestone, especially the one-year scan, as I knew your prognosis improves a great deal after that.
‘Time is a great healer. I used to think about the cancer every day. Now I only think about it once a week.’ Although surgery has long been known to be the best way to remove cancer and prevent it coming back, it can often have side-effects and long-term implications.
The Marsden trial is one of several recent studies assessing the effectiveness of alternatives to surgery for cancer.
The Clatterbridge Centre for Oncology on The Wirral already offers some bowel cancer patients a treatment known as Papillon, a low-energy form of radiotherapy.
In 2008, a study of 169 bladder cancer patients by Cancer Research UK found that survival rates among those treated with radiotherapy were the same as those who had radical cystectomy — surgery involving the complete removal of the bladder, which can result in continence problems and the use of a catheter.
Many prostate cancer patients are treated with ‘active surveillance’, because this form of cancer can be slow-growing.
Since prostate surgery can lead to problems such as impotence and incontinence, some men choose this method of close monitoring instead.
Anything that can help cancer patients avoid surgery is to be welcomed, says Lilian Wiles, head of patient services at charity Beating Bowel Cancer.
‘Previously, it was thought surgery was the only way to treat bowel cancer, and now we are realising that radiotherapy can be just as effective, and with chemotherapy the combination is very powerful indeed. So why risk having such disfiguring surgery if you can be treated without it’
She adds that more patients should be offered alternatives to surgery if they are suitable.
‘I’d be wary of saying it’s always going to be the better option — it will work for some people but not for others.
‘But there’s still a culture among some surgeons that surgery is the only option.
‘People should be able to explore all the options before they decide what they want to do, rather than being railroaded into what is their hospital’s policy or their surgeon’s preference.’
John is glad his gamble paid off. Indeed, at the time of his diagnosis he was warned that the radiotherapy treatment was likely to cause him to become infertile, so he decided to have his sperm frozen in a sperm bank.
Against the odds, he and his wife Anna, 32, whom he met after his cancer treatment, were able to conceive naturally.
‘There were some dark moments and I have not lost my respect for cancer,’ he says. ‘I’m still cautious. But now I’m starting to look forward again.’
To find out more about the trial, visit royalmarsden.nhs.uk. For information on bowel cancer, visit beatingbowelcancer.org or call 08450 719 301.